Thalassemia Patients and Friends
Discussion Forums => Thalassemia Major => Topic started by: ama on June 07, 2013, 01:24:04 AM
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My son who is 2 was on exjade 250 for almost 9 months. He had some fluctuations of lft, alt and ast both in range of 200+ but usually trend down with time to 100+ when recently dr decided to increase dose of exjade to 3 tablets of 125mg. His lft alt went upto 600. Dr decided to reduce exjade to 1 125mg tablet per day for a month. Now his ferritin increased to 1600 from 1200 on 1 tab but lft [alt] is normal 40.
Dr has decided to increase exjade again to two tablets of 125 for controlling ferritin. However, I am concerned that will it again cause lft to go up? Will this time , re introduction or increasing dose will be better tolerated by by son s liver?
Dr says if again alt go up to high levels then he will advise desferal.
The combination of exjade and ferripox is not yet used in combination in usa.
I am terrified of needles for my son and don’t want him on desferal. I want exjade to work.
My question is .. will liver tolerate reintroduction of exjade ? I am already splitting the dose of exjade and giving more fluids. Is there any other thing I can do to minimize the side effects and prevent lft from going up? Thank you so much for your help and guidance.
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Dear ama,
I understand your fear of desferal, my son was on desferal for 10 years. I think that you will have far better results if you split the dose of exjade - half in the morning and half in the evening. it will reduce side effects and increase efficacy. exjade always increases ferritin levels in the short time and reduces them in the long run. The reason for that is - exjade enters the organs and expells iron - which is then clear out of the plasma. If exjade and desferal are used in conjunction - the desferal (which is too big to enter organs) quite effectively clears iron from the plasma.
My son was on a trial studying the use of desferal/exjade together and he has done well. The 2 drugs are quite well studied together -but may not be best for a child the age of your son. I think that splitting the exjade dose and giving it with meals will work the best for you.
Best of luck and please don't hesitate to ask if you have any concerns,
Sharmin
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Thank you sharmin.. How is ur son doing on Exjade now? Is he still on desferal?
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Hi Ama,
My son has been on exjade alone since 2008 - he has maintained ferritin levels between 300 to 500 since that time. We have split his dose and give him exjade with food.
He used combination therapy exjade/desferal for less than one year - within a few months his iron levels came down so low that they had to stop the desferal - since that time he has been on exjade alone.
Best of luck!
Sharmin
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Hi,
My son has been on exjade for 6 years now. He has never used any other chelation medicine. Recently, he had a 3 month break from exjade because his ferritin level has dropped below 500. The doctor here in Perth thinks that if ferritin is kept too low, it will stunt his growth. His ferritin has now risen to 730 and he is back on 1 pill 250mg. He had a lot of problem when he first started exjade. His ferritin kept going higher and higher, reaching 5000 at one point. Then when it dropped, it continued to drop. I think it is different for everyone. So far, there are only 5 thalassemia children in Perth and out of them, 1 cannot take exjade.
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My wife is on desfiral for about 25 years as she is thal patient, she got Hep-C 3years ago, now her ferritin increased 4400 so I read about Exjade, so please my question is: does Exjade effects liver functions? Is it ok to use for Hep-c instead of desfiral ?
Thanks
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My wife is on desfiral for about 25 years as she is thal patient, she got Hep-C 3years ago, now her ferritin increased 4400 so I read about Exjade, so please my question is: does Exjade effects liver functions? Is it ok to use for Hep-c instead of desfiral ?
Thanks
Is L1/Ferriprox an option for you? In general, L1 does not affect liver or kidney functions and has worked quite well in lowering iron concentrations in thals with hep C.
Poirot
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Hi Poirot,
I am new here and I didn't hear about L1/Ferriprox before, by the way we visited my wife's Dr today and when I asked her about Exjade she said it has no side effect on Liver for Hep-c !! I am so confused and I really need help on that as I can read that Exjade increasing Alt and my wife already has High Alt (165) So will we start with Exjade as Dr recommend or we stick to Desfiral ?????! Or we try your option L1/Ferriprox???
I will appreciate all your help
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Dear Hamdan,
Where are you based?
Your doctor is correct insofar that Exjade is NOT contra indicated for Hep C infection. However, from a practical standpoint that is of little use as you don't want your liver to be affected by something else, when it is already battling Hep C.
Given that Exjade does not affect everyone equally, you could give it a trial and see if it further raises liver enzyme levels - if it does, then stop. If not, then you are set.
Ferripox is available globally now - so, you can ask your doctor about it.
Cheers
Poirot
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Dear Poirot,
Thank you so much for your advise, We are from Egypt, Cairo.
I will talk to her Dr about Ferripox but as you said we can give a try for Exjade as I read here it's so good, Now I want to ask you, I know that Exjade recommended dose for High Ferrtin is 30m/kg, my wife is 62KG so she should take about 2g daily of Exjade! but for some financial issues her Dr. said we can take 1g daily ( 2 bills X 500mg ) along with 1500-2000 mg Desfiral 3/4 days a week, is that good enough to work with here ferrtin high levels (4400)??
I will be waiting for your good advise
Thanks
Hamdan
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Hi All,
Please I am still waiting for an answer to my question, another very important question is, I heard about Ferriprox and Kelfer so we can make a combination with Desgeral but my wife has Hep-C and we are afraid to take any of it with Desfiral because of liver function increasing, so can she takes Ferriprox Or Kelfer with Desferal???? her Ferritine levels now are 4400 and I am so scared, please answer ASAP.
Thanks
Hamdan
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Hi Hamdan,
With her ferritin above 4000, combination chelation is appropriate. She can use desferal with either oral chelator. I don't like the halfway measure with Exjade. Again, patients are being made secondary to cost. If she can take full dose of Ferriprox along with 4 days of desferal each week, she would see good improvement. If she must take only half a dose of Exjade, I would suggest desferal 5 days a week.
Both are safe to use by patients with Hep C, as long as the regular monitoring of kidney and liver levels is maintained. I would also suggest using herbs like nigella and milk thistle to send the Hep C into remission. And she should drink tea with every meal.
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Hi All,
Please I am still waiting for an answer to my question, another very important question is, I heard about Ferriprox and Kelfer so we can make a combination with Desgeral but my wife has Hep-C and we are afraid to take any of it with Desfiral because of liver function increasing, so can she takes Ferriprox Or Kelfer with Desferal???? her Ferritine levels now are 4400 and I am so scared, please answer ASAP.
Thanks
Hamdan
Dear Hamdan,
Sorry for the delay in replying - I do not see this board on a daily basis and email to me works faster.
RE: Ferriprox/Kelfer - there are absolutely no problems in taking it with Hep C - I can say this from my personal experience and the experience of other thals + hep c on kelfer. Only thing to keep in mind is to EASE into the dosage for Kelfer and not start off with the full dosage immediately (max dosage that can be taken is 75mg/kg, although recent tests indicate that even 100mg/kg is well tolerated) - and that not everyone is suited for Kelfer. 1-2% of the patients report neutropenia, in which case the kelfer has to be stopped for 30-45 days. Then restart with a much lower dosage - if neutropenia recurs, then kelfer is not suited for you. Start off with 15-25mg/kg of body weight, and then keep increasing the dosage on a weekly/fortnightly basis until you hit the correct dosage levels. The daily dosage needs to be broken up and taken equally 3 times a day - 4 times a day, if you can really space yourself. Kelfer does not affect liver function, and will not raise the liver enzyme levels.
And, combination therapy with Desferal will also help, as the two drugs act on different organs when they start off - Kelfer on heart iron, Desferal on liver iron.
With Ferritin levels over 4,000, an aggresive chelation therapy is indicated.
Good luck.
Poirot
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Hi Andy and Poirot,
Thank you so very much for your great advises and I really appreciate that so much, one more question until we go to check with my wife’s Dr, next month can we just use Desferal 7 Days a week? my wife now on Desferal 2000mg daily and sometimes 1500mg daily for 12Hours, can that work to get her Ferritin down? and how long it could take? honestly my wife was not comfortable to use Kelfer with Hep C but since you said ok I showed her your msg and she wants to consult her Dr first next month, my question as above is "is it OK to use Desferal only 2000mg daily for 12Hours to lower firritin levels from 4400 to normal below 1000? and how long this could take?
Thanks
Hamdan
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Hi Andy and Poirot,
Thank you so very much for your great advises and I really appreciate that so much, one more question until we go to check with my wife’s Dr, next month can we just use Desferal 7 Days a week? my wife now on Desferal 2000mg daily and sometimes 1500mg daily for 12Hours, can that work to get her Ferritin down? and how long it could take? honestly my wife was not comfortable to use Kelfer with Hep C but since you said ok I showed her your msg and she wants to consult her Dr first next month, my question as above is "is it OK to use Desferal only 2000mg daily for 12Hours to lower firritin levels from 4400 to normal below 1000? and how long this could take?
Thanks
Hamdan
Prima facie, I would say that the dosage of 2gms Desferal a day is too low, even if given over 12 hours a day to bring down the Iron levels. You have not mentioned her body weight or the number of transfusions she takes per month - but, I am guessing that 2gms/day is just about a maintenance dose. Her iron may increase at that dosage. If she weighs more than 50kgs, I would increase that dosage to 3gms/day immediately.
Please consult your doctor immediately - corrective action is required urgently - longer she delays, the more the risk of organ damage and worse. Don't want to scare you, but a Ferritin level of 4400 is not good.
Best of luck,
Poirot
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Her ferritin will drop much more quickly with combination. Fears of using kelfer in patients with Hep C are unfounded and can be traced back to the false claims made by a Canadian doctor many years ago. This doctor's actions have cost many patients their lives and her claims about deferiprone should be ignored.
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Hi Andy and Poirot, Oh my God Allah, You were right! Her ferritin last month increased to 5150! So we went to her Doctor and she said that We have to increased desferal dose from 2grams to 3grams ( as you exactly said Poirot) and we have been working very hard last month with this dose daily for 10 to 12 hours and we made ferritin test 2 days ago and it was 6140!!!! Another thing that made me so worried that her Liver Function is increasing too!! I am so scarred, she refuses to take Kelfer because of what her Doc said that it increase liver function!! So please explain How come when she takes this high dose of Desferal ferritin goes up? Also liver function goes up? Please help me I need your assist I am so confused!
Waiting for your reply
Hamdan
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Hamdan,
Is she also taking Exjade? I think the combination is needed right now, so that the iron removal goes more quickly. I don't get alarmed about upward changes in ferritin when patients are chelating well. There are reasons this happens, and although it may seem alarming, it most often isn't. As iron is removed from the organs and tissue, ferritin levels often rise. This is not meaningful, as there is actually improvement going on in the organs and this is what is most important. The iron bound to ferritin cannot do any harm. It is the free iron in organs, tissue and blood that must be addressed and this is what chelation does. Until a significant impact is made on iron stores, you will not see much reduction in ferritin. I tell patients to look at it as a two year plan, because it takes at least that long to clean the organs. However, once this goal is reached, keeping iron low becomes much easier. I do recommend combination chelation.
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Hi Andy, thanks for your quick reply,
My wife use only Desferal 6 vials (3grams) daily for about 2months now, she is afraid to take Exjade or Kelfer because her doctor said so as she has Hepatits C and her doctor said that Kelfer is rising liver functions and last test her ALT was 298 and AST was 196 !! It was less than this 2month ago and since we started on chelating it goes up fast! So why her liver functions goes up very fast when we started on chelating with desferal? Is it because its high dose?! Is that dengrous?! She knows now how hard it is and she is ready to put the pump every night even for 2years! I know that you recommend combination chelating BUT she is scarred to use kelfer or exjade and i don't want to push her to take it SO can desferal only with this high dose (6 vials daily) help her to clean iron from organs and make ferritin level goes down? We can work hard for 2years but please tell me if desferal with this high dose for along time is OK?
Thanks a lot for your great help Andy you are wonderful person
Hamdan
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Hamdan,
Hepatitis can cause false ferritin readings because it is an infection, so I would say just be patient with her progress removing iron. However, hepatitis should be dealt with before it becomes a major issue. I highly recommend using an herbal approach before it gets to the point that medical intervention with drugs is necessary. I recommend both milk thistle herb and nigella. Both are very good for the liver and can help keep hepatitis dormant. I have heard very good reports from patients using these herbs and they are very mild and easy on the system, while the drugs used to treat hepatitis are quite harsh. Milk thistle can actually help liver tissue regenerate, in addition to being a blood purifier. This is relevant both with damage from hepatitis and damage from iron.
If the hepatitis is under control and the liver values become normal, Exjade can be considered.
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Hi Andy,
Thanks for your reply
I am sure it's not false reading and she has high ferrtin because my wife was not chelating well for the past 10 years! She was not aware about The dengrous resulta and Unfortunately I didn't know about it too!
We are going to pay more attention to hepatitis C but I don't know where to get Milk Thistle from here in Egypt? Please can you help?
We will be very patient and my question for you Andy is Dose Desferal with high dose 3grams daily (6 vials) effecting liver function?! Why her ALT & AST goes up fast when she is chelating? Is it because of agressive chelating she started suddenly after long time? Do we have to stop desferal and work on hepatitis? Or we can work on both at the same time? I am so confused and don't know what to do!! I am so worried as we are just focusing on high ferritin and we didn't pay attention to hepatitis, few months ago we went to Liver Doctor and he said that her liver was enlarged but he said she is ok and virus counts are so little and we did fibro scan and he said she is OK too so she told me that might be from Iron overload and she started on chelating now after I read here I understood many things and I am helping her to understand it too But we don't want to make any dengrous mistakes!! Thank you so much Andy and will be waiting for your reply.
Hamdan